I’ve been on midodrine and modafinil together for a week now for what my neuro suspects is dysautonomia, and I’m cautiously optimistic. I’m experiencing less crashes and my blood pressure is stabilized. It’s crazy how many drugs I need to animate my corpse, but I’ll take it.
#Lupus #UCTD #HealthSky
Those of us with #SmallFiberNeuropathy | #SFN | #Dysautonomia | #POTS | #Lupus | #UCTD
How do you get your water in?
Really annoying that just as summer’s ending, my joints and nerves are more functional and in less pain, just in time for it to get cold and my winter flare to start all over again 🙃
#Lupus #HealthSky #Spoonie #UCTD #SmallFiberNeuropathy #Dysautonomia #Arthritis
I went for a walk today! Just a short one, and I came back with a headache from the sun and crashed, but I got that D 😈🙌🏼
#Lupus #HealthSky #UCTD #SmallFiberNeuropathy #Dysautonomia
Forgot to report back, but I'm loving my shower chair! I took my first everything shower in forever and it was glorious.
#Spoonie #HealthSky #Lupus #UCTD #Dysautonomia
I used to love summer - I worked at a camp, I went hiking with my dogs, I spent afternoons in my parents’ pool. But now if I spend time outside between 10am and 5pm, I need a full day of rest afterwards. It’s so frustrating being sick and it’s not something that’s just going to go away. #uctd #lupus
Had the audacity to spend time with my friends and family in the sun this weekend and now I’m flaring. Just when I was starting to feel a bit better too 😞 #uctd #lupus
May is Lupus Awareness Month. Help Us Solve the Cruel Mystery. Lupus Foundation of America.
Just when you "get used to" 😉 one set of lupus symptoms, your immune system gets bored or whatever and starts chewing on something else.
In related news, I've found it's better for my mental health if I think of my lupus as a weird pet that adopted me.
#NPSLE #Lupus #Dysautonomia #Spoonie #UCTD
One of the craziest things about having an #invisibleillness like UCTD or fibromyalgia is those days where you wake up feeling...normal. Like you used to. And you spend all day wondering what you did different so you can stay that way but you can't. #painsucks #spoonie #UCTD
#chronicpain #enjoytoday
Autoimmune diseases are no joke. Please be gentle kind to someone struggling.
All I did was get blood work done & now I'm so weak getting out of my chair is physically exhausting. I'm trying but my body says "That's a hard no"
#autoimmunedisease #uctd #undifferentiatedconnectivetissuedisease
💊 You know how your pill box helps you remember if you take the right meds at the right time, but then there are the meds that don't go in the pill box and you still need a system for them... I got you covered. My med trackers are now on maiettaink.com!
#lupus #uctd #fibrofog #brainfog #tbi
Making a late lunch because Monday 😵💫 is also Benlysta hangover day. It's usually a low-energy day for me. Today's lunch is my go-to baked salmon with jasmine rice and broccoli, and all the soy sauce. What are you having for lunch?
#lupus #uctd #fibromyalgia #spoonie #spoonieauthorchat
me as a superhero jumping from an exploding building carrying a blue stick figure. the stick figure says "WOW LETS SMOOCH." and I am saying "no thanks." The caption reads "at 8pm i took a well deserved break from being disabled to save a pretty lil lady in distress from an exploding building." the next caption reads "i'm totally kidding i'm actually still in bed.
Okay #HourlyComicsDay, pretend the stick figure is a total bae, my hands are getting tired.
#disabledartists #comics #animator #disability #disabled #POTS #MALS #EDS #UCTD #art #hourlycomicday #illustration
comic of me wearing headphones and a shirt that says space raptor butt invasion with music notes around me. 7pm, caption "if you think watching me sit in bed is boring, just wait until you learn i just here listening to the same 3 songs on repeat. getting away with murder by papa roach, the emptiness machine by linkin park, and diary of jane by breaking benjamin." on the right hand side, i am saying to myself "do something interesting, ugh!"
I promise I am actually very interesting #HourlyComicsDay.
#disabledartists #comics #animator #disability #disabled #POTS #MALS #EDS #UCTD #art #hourlycomicday #illustration #music #rock
me laying in bed with caption: 1pm - 6pm ate 1/4th cup of soup and got too sick to draw more hourly comics for the next few hours. eating is difficult for me. both my celiac and sma arteries are compressed by a ligament due to mals. this means my stomach and organs are not getting enough blood to do their jobs. the pain level is often compared to end stage pancreatic cancer. feb 17 is mals awareness day"
Hi #HourlyComicsDay, I am back after having a rough fight with a bowl of soup.
The soup won.
#disabledartists #comics #animator #disability #disabled #POTS #MALS #EDS #UCTD #art #hourlycomicday #illustration
me sitting in bed on my computer. caption "BREAKING NEWS. SPACESHIP BEING PILOTED BY GOPHERS CAUSES AN INTERNATIONAL FOOD SHORTAGE AFTER CRASHING INTO FARM. PRESIDENT RESPONDS BY BLAMING INFANT AT LOCAL PRESCHOOL." other caption "working on comics while the world falls apart. a box of ensure next to me that is poop flavored.
Just working and sipping on... *squints*... "poop flavored" Ensure as the world falls apart. #hourlycomicsday
#disabledartists #comics #animator #disability #disabled #POTS #MALS #EDS #UCTD #art #hourlycomicday #illustration
11am comic panel of me laying in bed frizzy haired with a shirt that says space raptor butt invasion. caption: Sat up.. then had to lay back down. pots is a dysfunction of the autonomic nervous system where the heart doesn't adjust properly to sitting or standing. so basically, you faint or have presyncope.
Heck yesss I did TWO comics for #HourlyComicsDay I'm on a roll!
#disabledartists #comics #animator #disability #disabled #POTS #MALS #EDS #UCTD #art #hourlycomicday #illustration
comic panel 1: rear view of me, frizzy haired, laying in front of a computer in bed. speech bubble coming from computer says "10 am IT'S HOURLY COMIC DAY." speech bubble coming from my head that says "crap". side view of me, in wrist braces on my bed in front of my computer. captioned: "I never have the spoons to participate in this but im going to give it a shot. hi, im d.j. stewart! most people call me "stewart" im a disabled animator with multiple rare chronic illnesses, (mals, pots, uctd/eds, visual snow, visually impaired from an eye stroke, and all manner of heart crap that i wont even get into among other things.) im mostly bedbound, so dont expect the comics to get too wild."
It's #HourlyComicDay! You know what that means? HOURLY COMICS. In my case this will probably be more bi-hourly or tri-hourly. I never participate in this and at least will do my best this time around.
#disabledartists #comics #animator #disability #disabled #POTS #MALS #EDS #UCTD
#SystemicExertionalIntoleranceDisease, #SEID , #autoimmune, #cysticfibrosis, #dystonia, #parkinsons, #PCOS, #cf, #Raynauds, #Sjogrens, #neuromyelitisOptica, #NMOSD, #narcolepsy, #urticaria, #idiopathichypersomnia, #Psoriasis, #PsoriaticArthritis, #UCTD, #MCTD, #hypersomnia, #CVID, #CPP, #PID,
4/6
Interests: all things science, ecology, human ecology, env policy, sustainability, accessibility, cancer universe for my dear stage 4 lung cancer #alk+ husband who is my moon and stars, autoimmune d, #relapsingpolychrondritis, #uctd
I want to continue connecting with more #NEISvoid and #disabledsky folks on here. I have #POTS, #hypermobility, and #UCTD, and I’m hoping eventually my PhD research in medical sociology will lead to effective interventions in medical education to reduce #medicalgaslighting and #medicalmisogyny
My connective tissue getting ready to f*ck up my day [a pic of a suspicious looking muscular system behind a skeleton that looks surprised]
#autoimmune #chronicillnesshumor #chronicillnessmemes #autoimmunememes #connectivetissue #mctd #uctd #lupus #heds #eds
Me to my connective tissues that aren't connective tissue-ing 'A dog looking back at you from a seat ahead of you - "Wanna Hear a Secret? U a bitch"
#lupus #mctd #uctd #rheumatoidarthritis #connectivetissue #autoimmune #autoimmunedisorder #autoimmunememes
These insights may inform treatment strategies.
👉#GERD #UCTD #ConnectiveTissue #HealthcareResearch @OlenaZimba @YuliyaFedorchen @ArmenYuri
doi.org/10.30978/MG-20…
Me: okay, immune system, don't freak out, but we've come across a minor inconvenience. My shitty immune system, dousing itself in gasoline: Burn it to the ground.
#autoimmune #autoimunememes #autoimmunedisease #lupus #mctd #uctd #rheumatoidarthritis #scleroderma #myositis #fibro